13 April 2010

diagnosed

diagnoses:: ehlers danlos syndrome.

10 comments:

agoraphob said...

wow em,

So sorry to hear this. My best friend was diagnosed with EDS last year. She is doing well, though.

Hang in there.

Coffeecup said...

Em I had to look this up. Not at all certain what this means for you, I mean, you're gonna be okay right? Here to listen when and if you're ready to talk about it.

Wishing lots of love and sending a big virtual ((hug)) XXX :(

Nechtan said...

Hi Em,

I don't know what EDS is. Recently I have seen it mentioned on Anxiety forums but never explained. I had a look for info but still can't understand whether this is good or bad news for you.

You must be shattered so please get some rest. I do hope they didn't just give you a diagnosis but information of what that means for you too. And I do hope it is good.

Wishing you well, take care.

Nechtan

ellen said...

Thinking of you Em...I hope now you have a diagnosis that means there is a treatment? In any case, take care

Rusty Hoe said...

Hey Em

at least it's an answer at least you're not in limbo anymore. Did they give you a management plan? Over here when I raised it thanks to my hypermobile joints I got the well you can't do anything about it so suck it up. At least they take it a bit more serious in the UK. Did they think it was linked to your dys issues? Hope you've been able to take your time to wrap your head around it all. Thinking of you.

hugs
Michelle :)

Achelois said...

Hi Em, I misunderstood this post in my last comment I am so sorry.

I wonder if you would like to email me. I am not happy giving out my email address to the world via my blog and haven't worked out how to change my googlemail address linked to it which I use for everything.

Nechtan however has an email facility on his blog and I wonder if he didn't mind me emailing him my email address and you gave him yours he could forward them! I trust him. If you don't want to email I totally understand and won't take it personally I promise.

Its just I was diagnosed over twenty years ago with ehlers danlos and I know what it feels like to be recently diagnosed. I don't know what type you have.

Em everything will be ok and you don't have to make any changes yet or make any decisions about management of the condition until you are ready. I don't know what the Prof has suggested or if he has referred you to Prof Matthias etc. Sometimes treatment options initially can seem quite aggresive particularly on the physio front and that can be scary. But you are lucky being so close to the hypermobility clinic.

Em please think about the email thing as I have great empathy for you and would like to offer the hand of friendship as best as I am able.

I am thinking of you and please take your time whilst the actual diagnosis is so recent.

Things will be ok truly they will. As coffeecup says we are here to listen.

To agoraphob - I am pleased to hear your best friend with EDS is doing well. It seems even the virtual world is small.

Nechtan I hope you don't mind the cheeky email suggestion its all I can think of.

Em... sorry for long comment. I just want you to know I care and am here if you need me.

Nikki said...

Hi,
Im sorry, like some of the others I dont really know what this means for you.. I obv hope youre ok with the diagnoses, I feel things like this can be a positive, its a place to start, esp when you now know what youre dealing with and how its treated?

Hugs to you x.

Nechtan said...

@Achelois and Em- No problems at all. If you would like to exchange email addresses via me I'll be sure to pass them on.

Alll the best

Nechtan

diver said...

Hi Em. At least you're out of the phase of 'not knowing'.

Are there different severities of EDS? If so, here's hoping yours is on the mild side and manageable :)

Thinking of you Em.
Digital hugs from Diver x

Em said...

hi shelley

thanks, im glad your friends doing ok. xxxx

---------------

hi steph

i dont have common conditions steph, i have to have a rare one!!! id never heard of it before dr at kings mentioned it. thanks for your support. xxxx

---------------------

hi nechtan

eds is a connective tissue disorder, dont know much about it myself at present, still finding things out. although the prof did mention that people with it suffer with anxiety, so theres something i didnt know!!! xxx

-----------------------

hi ellen

i think the only treatment there is, is painkillers and physio. but hey im new to this so there may be other options available. hope your doing ok. xxx

------------------

hi michelle

yep the prof thinks that the eds is causing the pots. he was sympathetic, i was told that if they could find the reason for the pots then they could treat that and the pots would be cured. well in his words, its not as simple as that. when are things simple! others then meds and physio i dont think they can do much more, but i think i was concentrating to much on the pots, hoping that could be eased or cured. alot of the symptoms ive found out overlap. hope your feeling ok at present. xxx


-----------------


hi achelois

will certainly swap email addresses, advice would be welcome.

prof suggested that i carry on with the dr at kings for the pots, he also said i should see a gastro, in whitechapel that deals with tummy issues, and physio at st johns and lizzies, i think he could see the bemused looking face i presented so hes going to write the summary of the appointment when i receive it i can make up my mind what i what to do. i knew what was coming, yet i was still stunned with what it meant for my pots, it cant be cured.

thanks again will be sure to send my email in a few days. xxxxx


-------------

hi nikki

thanks, i suppose knowing they can only treat the symptoms, stunned me. i just assumed with modern medicine that they could wave a medical wand and all would be well. silly me eh? xxx

--------------------

hi diver

thanks, theres quite a few different types. im still learning too with the condition, although looking through my family it shouldnt of been that much of a surprise. xxxxx.